Colleen Angela Van Etten

1. Dignity and Respect

Although passengers shouldn’t be forced to accept special services or subjected to restrictions not imposed on other passengers, asking for early check-in, advanced notice or documentation, or pre-boarding to receive certain disability-related services is permitted.

2. Information About Available Services and Aircraft Capabilities and Limitations

The information must be specific to the aircraft scheduled for the flight, unless unfeasible, and include accommodation limitations involving level-entry boarding, aircraft storage, and accessible lavatories, for example.

3. Information in an Accessible Format

Aircraft size, passenger counts, and installation dates affect access requirements for websites and automated kiosks. Passengers who identify as needing visual or hearing assistance must receive prompt access to the same trip information as other passengers.

4. Accessible Airport Facilities

An accessible route between the gate and aircraft boarding location is required. When level-entry boarding is unavailable, ramps or mechanical lifts must service most flights. Service animal airport relief areas are also required.

5. Assistance at Airports

Trained airline personnel must provide timely enplaning and deplaning help using wheelchairs, accessible motorized carts, and ramps or lifts to move to and from the curb to departing or arriving flights, between gates, and to baggage claim or a restroom entrance.

6. Assistance on the Aircraft

If passengers self-identify as needing additional time or assistance to board, stow accessibility equipment, or be seated they must be allowed to board before all other passengers. On board help includes moving to and from seats or the lavatory and stowing and retrieving carry-on items.

7. Travel with an Assistive Device or Service Animal

Assistive devices typically count as free cabin carry-ons. Wheelchairs must be transported subject to safety, security, and size requirements. Compensation is required for lost, damaged, or destroyed wheelchairs or assistive devices. Service dogs may accompany passengers unless exceptions apply.

8. Seating Accommodations

Seats with a movable aisle armrest, space for a service animal, more leg room, or adjoining a personal care assistant must be given to passengers who identify to airline personnel if the seat exists on the same class of service.

9. Accessible Aircraft Features

New aircraft delivered after designated dates must comply with standards for movable aisle armrests, priority in-cabin wheelchair stowage space, accessible lavatories, and on-board wheelchairs.

10. Resolution of Disability-Related Issue

An expert Complaint Resolution Official must be available to resolve disability-related issues, including on the spot decisions. Passenger complaint procedures are outlined for airlines and applicable federal agencies.

You may also want to read:

• “Airline Passengers with Disabilities Bill of Rights.” United States Department of Transportation. July 26, 2022. https://www.transportation.gov/airconsumer/disabilitybillofrights
• Angela Muir Van Etten. “Air Travel Shocks.” Blog post. November 14, 2022. https://angelamuirvanetten.com/air-travel-shocks/
• Angela Muir Van Etten. “Add Teeth Not Candles for Birthday of Air Carrier Access Act.” Blog post. October 3, 2022. https://angelamuirvanetten.com/air-carrier-access-act/
• Angela Muir Van Etten. “Tired of Waiting In Airports?” Blog post. March 1, 2021. https://angelamuirvanetten.com/tired-of-waiting-in-airports/
• Angela Muir Van Etten. “Which Animals Fly for Free?” Blog post. January 11, 2021. https://angelamuirvanetten.com/which-animals-fly-for-free/

As expected, a statement of Patient Rights and Responsibilities provides for nondiscriminatory care regardless of classification in a protected class like age, race, socioeconomic status, religion, or disability. Surprisingly I found introductory text (not part of the Patient’s Rights statement) limiting patient protections to those who are “sick or injured” and referring to disabilities as “challenges”—an inaccurate euphemism shading disability as a problem to overcome.

Robert’s rights were mostly respected during his stay as shown below:

• His refusal to allow an ER doctor to insert an IV in the bone of his upper arm was accepted.
• His interest in pastoral care was documented when he was being processed for hospital admission. As a result, he was visited by both his own church pastor and the hospital chaplain.
• Communication between Robert and health care staff was facilitated by ensuring that he had access to his hearing aids.
• The reasons for his transfer from a regular room to the Progressive Care Unit, staffed by ICU nurses, was explained.
• He was informed and participated in decisions affecting his care, health status, services and treatment.
• He was permitted to choose his spouse to assist him in care, treatment, and service decisions.
• He was told what he needed to know about his health condition after hospital discharge.

However, the following rights were disrespected:

• A hospital doctor did not inform Robert of the risks associated with inserting an IV in a vein in his upper arm in the location that might be needed for future kidney dialysis treatments. This was especially egregious given that Robert has stage four kidney disease and his treating physician would not have agreed to using this vein.
• A nurse threatened the equivalent of a physical restraint when she chastised Robert for exiting a recliner chair without staff supervision. She treated Robert like a child when she threatened the consequence of putting him back in bed so that he couldn’t get up independently. Her issue was more about a staffing shortage than safety!
• Individual dignity was trashed when he had to lay in his own excrement for an extended period of time after being plied with laxatives and a suppository.

Finally, even though Robert had a say in who could visit him, an out-of-reach handset prevented his wife from calling to request entry into the ICU. A Bill of Rights should provide accessibility to a patient’s disabled visitors.

Please share how well your rights as a patient have been protected.

You may also want to read:

• Bill of Rights. 1791. https://www.law.cornell.edu/constitution/billofrights
• Florida Patient Rights and Responsibilities. Cleveland Clinic. 2023. https://my.clevelandclinic.org/about/website/patients-rights-responsibilities#florida-patient-rights-tab
• Patient Rights and Responsibilities. Cleveland Clinic Martin Health. November 2020. https://my.clevelandclinic.org/-/scassets/files/org/about/patient-rights-responsibilities/florida-patient-rights-and-responsibilities-english.pdf?la=en
• Angela Muir Van Etten. “My Path to Citizenship.” Blog post. December 18, 2022. https://angelamuirvanetten.com/my-path-to-citizenship/

class action case, Mills vs. Board of Education, District of Columbia, claimed that the Defendants denied students with various disabilities access to publicly funded education with no alternative placement. The court ruled for the Plaintiffs—348 F. Supp. 866, 871 (D.C. Cir. 1972) on August 1, 1972—and followed Brown v. Board of Education, 347 U.S. 483, 493 (1954) in finding that public education is “a right which must be made available to all on equal terms.”

IDEA is a monumental piece of legislation that changed the course of history for students with disabilities. It guarantees a free appropriate public education in the least restrictive environment to children with the disabilities listed in 34 CFR § 300.8(a)(1)—impairments involving the intellect, hearing, speech or language, vision, an “emotional disturbance,” orthopedic, autism, traumatic brain injury, other health impairment, a specific learning disability, deaf-blindness, or multiple disabilities—who, by reason thereof, need special education and related services.

Before IDEA, federal law did not require American schools to accommodate students with disabilities, and many disabled students received little to no education. The same scenario played out for Little People where I grew up in New Zealand. For example, Lillian was not sent to school until she was nine years old, and then for only six years. Danielle dropped out at age 12. Both were academically capable of completing a full education program, but because of their short stature they were denied this opportunity. Indeed, the paternal decision not to advance Danielle from elementary to high school was intended to protect her from teasing.

I am grateful for a totally different educational experience. At age five, I was mainstreamed in public school with other kids my age. There was no reason not to. My size did not affect my ability or intelligence. Physical limitations could be accommodated and dealing with the teasing of other children was something I would have to learn sooner or later.

I also appreciate that the accommodations I received did not separate me from other kids. For example, in 12^th grade, my teacher found a creative way to include me in our geography field trip to a farm. She first considered a horse as my transport, but decided it would be too much for the horse! I was the envy of every kid in the class when Alan, a boy in my class, was co-opted to ride me around the farm on his trail bike.

So how does your experience with special education encourage this celebration?

You may also want to read:

• Angela Muir Van Etten. “From Minus one Million to Plus Seven Million.” Blog post. December 7, 2020. https://angelamuirvanetten.com/from-minus-one-million-to-plus-seven-million/
• Angela Muir Van Etten. “Always an Advocate,” Chapter 20, Special Education for Students with Disabilities. October 2021. https://angelamuirvanetten.com/always-an-advocate/

• Angela Muir Van Etten. “Dwarfs Don’t Live in Doll Houses,” Chapter 2, Educated. May 1988. https://angelamuirvanetten.com/dwarfs-dont-live-in-doll-houses/

Under a lesser known provision, States and local governments can receive payments to make polling places accessible to individuals with disabilities and train election officials, poll workers, and volunteers on how best to promote access and participation of people with disabilities in federal elections. (Discussed in Chapter 17 of my book, Always an Advocate, https://angelamuirvanetten.com/always-an-advocate/.)

But none of these reforms winnow the field to the candidate that will truly represent the interests of their constituency. Even though candidates bend over backwards to identify with potential voters by sharing details of their family, education, employment, gender, and race, how many candidates identify with disability? Very few. So let’s add another help to encourage people with disabilities to vote—more candidates with disability lived experience.

This post shares details of four people with dwarfism who serve as candidate role models.

Lee Kitchens—a dwarf with Spondyloepiphyseal Dysplasia—was a two-term alderman and five-term mayor of Ransom Canyon, Texas where City Hall is situated on 24 Lee Kitchens Drive! His Bachelor of Science in Electrical Engineering took him to a distinguished career with Texas Instruments and teaching at Texas Tech University. He twice served as Little People of America President and co-founded the Coalition of Texans with Disabilities.

Joe Roach—a dwarf with Achondroplasia—a three-term Houston city councilor, was the first dwarf elected to office in a major American city. Prior to his election, Joe was an acclaimed prosecutor in the Harris County District Attorney’s Office. He wanted to be known as a good council member or a bad council member not as a “Republican midget,” as an affirmative action program manager called him; she was rebuked with a 3-day suspension without pay.

Tony Soares—a dwarf with Achondroplasia—served on the Hoboken, New Jersey, City Council for eight years. He was elected while working as an advertising executive and defeated an opponent who didn’t take him seriously. He founded and led Hoboken’s Reform movement and won respect for his persuasiveness. After stepping aside from a mayoral race, one supporter later imagined Hoboken with Mayor Soares leading it instead of the “unqualified idiots” who served after him.

James Lusted—a 43-inch dwarf with Diastrophic Dysplasia—is the first dwarf councilor elected in the United Kingdom. He represents Rhos-on-Sea, on the Conwy County Borough Council in North Wales. This actor and TV presenter is a member of the Dwarf Sports Association and carried the Olympic torch through his hometown. His appointment as the Leader’s Disability Champion gives him a nationwide platform to encourage the participation of people with disabilities in public life.

How about you? Are you brave enough to throw your hat in the ring?